Take Control Of Your Care When You're Seriously Sick Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.
Here's what to remember:
- Your primary care doctor is the captain of your health care team.
- Don't be afraid to get a second opinion.
- Get organized, and find someone to help you if you can't do it yourself.
- If you need a procedure, go to someone who does it all the time.
- Use the Internet, but use it wisely.
- Figure out what matters to you, and fight for it

Take Control Of Your Care When You're Seriously Sick

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One day back in 2008, Liz Salmi was at work, and she started feeling dizzy.

LIZ SALMI: So dizzy that I thought, gosh, I should probably lay down on the ground, and I laid down on the ground.


That was the day that totally changed her life.

SALMI: And then suddenly, my body started convulsing, which was a new experience to me. And it was happening on one side of my body. And then eventually, I just blacked out. And many hours later, I woke up in the emergency department.

GORDON: She was scared, and she was overwhelmed. The doctors weren't sure what was going on. They found something on an MRI of her head, and they told her there was something wrong with her brain. She needed surgery.

SALMI: So that was the first scary part of, oh, my gosh, we're going to open up your skull and go in, and tools are going to be in there pulling something out.

SCHUMANN: Liz found out what was going on a few weeks later, and it ended up being not only terrifying but also pretty confusing.

SALMI: The words of what you have are delivered in, you know, really technical speak. They don't say you have brain cancer. They say - they - the doctor - neurosurgeon says you have a grade II astrocytoma. It has gametocytic properties.

GORDON: Liz finally had a diagnosis, but she still had one burning question.

SALMI: So do I have brain cancer?

SCHUMANN: You know when you're hearing the words but have no idea what's really being said? She had all of this information but no clue about what it meant.

GORDON: So Liz went online, and she found a support group for young people with cancer. She started talking to another guy who had the same diagnosis that she did.

SALMI: And I said, do I have brain cancer? And he's like, has your doctor not told you? I'm like, they're not really telling me.

GORDON: Someone on the Internet had to tell Liz she had cancer. It wasn't her doctor.

SCHUMANN: Yeah. And, unfortunately, her story isn't even all that uncommon. Our health care system can be really confusing. But for Liz, 11 years later, she's no longer so overwhelmed.

GORDON: She is now an empowered patient advocate who is living and thriving with brain cancer.

SCHUMANN: And as Liz exemplifies, there are strategies to help you navigate our crazy health care system.

GORDON: I'm Mara Gordon, a family physician and NPR's health and media fellow.

SCHUMANN: I'm John Schumann, a general internist and contributor to NPR's Shots blog. I also host Medical Mondays for Public Radio Tulsa.

GORDON: We are your hosts of NPR's LIFE KIT about navigating health care. And this episode is about what happens when you get seriously sick.

SCHUMANN: We're here to help you feel less confused and more in control even when you face a terrifying diagnosis. More after the break.


SCHUMANN: When Liz Salmi got her life-changing diagnosis at age 29, she suddenly had a lot of new doctors to keep track of. Before she even learned she had brain cancer, the only doctor she'd ever seen was her primary care doctor.

SALMI: I didn't know who was in charge out of all of these people. And I remember at the very beginning thinking the emergency doctor - that person's name is on this piece of paper. I should probably keep contacting this person.

SCHUMANN: Liz had a lot of questions, so understandably she sent them to the last doctor she'd seen.

SALMI: So I kept trying to email the emergency doctor. And looking back, I feel bad for this person. They're probably like, I'm done with you. Like, you don't need to keep contacting me. Clearly, someone else must be your doctor right now.

GORDON: So most emergency docs that I know, they really do genuinely care what happens to the patients that they see in the ER, but still, that wasn't the right person for Liz to follow up with.

SCHUMANN: The right person would have been her primary care doctor, and that's takeaway No. 1. Think of your primary care doctor as the captain of your health care team.

GORDON: Your primary care doc is trained to think big picture, you know, things like, how's your overall well-being? How are medications interacting? How could an illness affect your mental health? And that doctor can also help coordinate treatment plans from different specialists.

SCHUMANN: So if you get a serious diagnosis, it's important to get yourself a primary care doctor as soon as possible.

GORDON: I'll admit that, John, you know, you and I were a little bit biased because we are both primary care docs - the best kind of docs in the world.

SCHUMANN: Hey, we are the base of the health care pyramid. You've got to go through us.

GORDON: (Laughter) But don't just take our word for it. We talked to Marty Makary, a surgeon who is about as specialized as you can get.

MARTY MAKARY: I had somebody come in and say, doc, we want you to operate on our dad's heart. Well, I'm not a heart surgeon. And they're like, no, no, we just trust you. I should not touch that case, right? And...

GORDON: (Laughter) You seem like an amazing, gifted surgeon, but I would not want you operating on my heart either.

MAKARY: Me neither.

SCHUMANN: Marty actually focuses on pancreatic cancer, a totally different part of the body. He's a professor at Johns Hopkins University, and he says having a primary care doctor is the most important thing if you get sick.

MAKARY: God bless. Both of you are primary care. We have primary care doctors who want to be in the loop of everything that happens with that patient. You want somebody who's fighting for you like that.

SCHUMANN: Luckily, Liz Salmi had a great primary care provider, and she slowly realized it wasn't going to be that ER doctor she'd turn to for help. It was her primary care doc and her neuro-oncologist, who is a brain cancer specialist.

GORDON: So Liz started to think of it as, you know, her neuro-oncologist, that person's in charge of her brain treatment, and her primary care doctor is in charge of everything else.

SALMI: I go back to the primary care doctor, and primary care will say, you know, how's the brain doing? But it's like I have a division based off of body parts. If it's the brain, it's the neuro-oncologist. If it's anything else, go to the primary care first. We have a definite team relationship, but I know who's the expert in which category.

SCHUMANN: By the way, if you need a little help finding a primary care doctor and keeping one, check out Episode 1 in this LIFE KIT guide.


SCHUMANN: When Liz Salmi got her diagnosis, she responded in the way that she always had to other life challenges - with a can-do attitude.

SALMI: For me, I'm this kind of person who wants people to like me. And for some reason, I really wanted this neurosurgeon to like me, so it felt like if he liked me, he'd treat me better. And so I was like, all right, great, sounds great. So what do we do next?

GORDON: Because she was trying to get her doctor to like her, she went ahead with all of his recommendations, even though she didn't really understand them. She realized that she needed to hear all of her options, not just the ones that that first neurosurgeon suggested.

SCHUMANN: What Liz needed was a second opinion. And that's our next takeaway.

SHANNON BROWNLEE: Any time you are told you need a seriously invasive procedure, you need a second opinion.

SCHUMANN: That's Shannon Brownlee, senior vice president of the Lown Institute, an organization fighting against profit-driven health care. And just like you wouldn't make a big purchase like a house or car without shopping around, Shannon says we should always hear what another doctor has to say before starting a major treatment plan.

GORDON: Most doctors are so used to this that they'll actually expect you to seek out another perspective. And you should just tell your doctor directly, I would love to get a second opinion. Who do you recommend?

BROWNLEE: Any doctor who doesn't want you to get a second opinion is a doctor you shouldn't be seeing.

SCHUMANN: Needing a second opinion is so common that some doctors make them an official part of their practice. Marty Makary does that.

MAKARY: If you're going to have something major, like a big operation or you're told you need to take a medication for the rest of your life, that's a big deal enough that where you should get another opinion. It's worth it.

SCHUMANN: If you can, try to see someone outside of your immediate geographic area since research shows physicians who work near one another tend to follow the same practice patterns.

GORDON: If you really want a new perspective, you shouldn't just go to your doctor's colleague. Go to a totally different hospital system.

SCHUMANN: And this may not even require travel. Marty and his colleagues at Johns Hopkins do virtual second opinions where patients send in their testing and he talks to them on the phone.

MAKARY: We take phone calls at our offices. People will call the office and say, I had a CAT scan. I was told I have pancreas cancer. Can I speak with Dr. Makary? And many times, we can streamline the care.

GORDON: So this is our second takeaway - don't be afraid to get a second opinion.


GORDON: A doctor's office is a pretty stressful and weird place. When you're in one, it can be hard to process all the information that's coming at you. Take it from Marty. He's in one all the time.

MAKARY: A doctor's office is a very awkward place, OK? You're wearing some ridiculous gown. You can't use the phone. The chairs are uncomfortable. You're sitting on a bed with paper for sheets. I mean...

GORDON: It's cold.

MAKARY: It's cold. It's very awkward, right?

SCHUMANN: When you go and see a specialist, you're usually facing a scary diagnosis, and you aren't even thinking clearly. It can be hard to stay organized, so Marty suggests bring along a friend or family member, someone who can keep track of all the logistics and details for you.

MAKARY: People act weird in the doctor's office. They're not always listening. Oftentimes, they're scared. You want to be able to have somebody there to listen with you, take notes and maybe even have a copy of important records that they can share so you can just think through things without having to worry about all the paperwork and shuffling.

GORDON: This is our third takeaway - get organized, stay organized and find someone to help you if you can't do it yourself.

SCHUMANN: Another way to make this happen is to get copies of all your medical records. That way you can see in writing exactly what the plan is.

GORDON: Liz Salmi says that reading what was in all of those doctor's notes actually made her feel way less overwhelmed.

SALMI: And I was surprised to see that there were a lot of really detailed notes from my doctors that were written about me. We saw Liz today. Liz is feeling like this. This is the kind of work Liz does. Liz has a cat. Liz is married. And here's how, you know, her neurological exam was. I mean, it was really detailed and then went into, you know, the really medicine-y (ph) stuff. And we reviewed - you know, we reviewed her scans. She's looking good. She's going to continue to do X, Y and Z. And I thought, gosh, my doctors are really listening.

GORDON: I actually try to write really detailed notes about my patients. I - sometimes I think they're a little too long. I've been accused of, you know, writing manifestos in the chart, but I always try to include something about, you know, who lives at home with my patient or what they do for a living.

SCHUMANN: I definitely try to keep some of those details in there because it helps me distinguish between the patients, especially, like, hobbies or occupations. But the notes are also to explain my doctor thinking. You know, I explain why I'm choosing a certain plan. And that's to communicate with other health care providers. But, you know, nowadays, I always write with the patient in mind, too, because I want the patient to be able understand what we're doing.

GORDON: Yeah. I think - you know, I print my notes for every single patient. And I think it helps them really figure out how to follow through with the plan that we come up with. And Liz Salmi, she started using what's called a patient portal to keep track of everything for her health. A patient portal is this secure online system. It's basically on your smartphone. And you can get access to all of your records and all of your test results. And most doctors' offices and hospitals have these patient portals. And if yours doesn't, there's a very good chance that they're going to be adding one soon.

SCHUMANN: Remember; it's your legal right to see your records, and you definitely should if you're interested. And you can also ask a doctor for copies of visit notes and test results. But, you know, just having all this at your fingertips or on your smartphone, it makes you feel much more in control.

GORDON: Liz feels so much more in control that she's actually dedicated her career to helping other patients get a hold of the same information. She now works for an organization that's called OpenNotes, and their whole mission is to help get patients routine access to their charts.

SCHUMANN: Having all this information on your phone can help you stay organized as you navigate a challenging world of appointments and tests. Liz Salmi says there's actually research that shows it helps patients get better care.

SALMI: Patients who've been reading their notes long term say that they better understand their medications and, like, why they're prescribed. And then another takeaway that's important is just how this increased sense of trust happens for patients. They feel like, oh, my doctor really knows me. They wrote about me. They wrote about this entire visit.

GORDON: Many specialists offices, they also employ social workers or care coordinators who can meet with you. And they can help make sure that you're staying on top of all of your appointments.

SCHUMANN: It's totally overwhelming to be sick. And so takeaway No. 3 is that getting organized and staying organized can just make it feel a little more manageable.


SCHUMANN: When you get a serious diagnosis, your doctor may tell you some of the scariest words you can possibly hear - you need surgery.

GORDON: So how do you go about making sure that surgery is actually what you need? And how do you find the right person to do it?

SCHUMANN: Mara, you remember that saying we have at primary care? When you have a hammer, everything looks like a nail.

GORDON: (Laughter) Right. But sometimes a hammer isn't the right tool to cure you. You need the screwdriver or a saw or a power drill.

SCHUMANN: OK. OK. OK. All right, listen; that metaphor is not perfect. But there's always been a bit of a playful rivalry between surgeons and non-surgeons. And what we're saying is that surgery doesn't solve every medical problem.

GORDON: Now, of course, John, that is not to say that we are not grateful for our amazing surgeon colleagues.

SCHUMANN: Yeah. And they work really hard and spend many years learning how to operate. And they do lifesaving things.

GORDON: Yeah. Surgery residency is the hardest thing I can imagine. But even Marty Makary, he's the surgeon at Johns Hopkins, he agrees with us.

MAKARY: One of the orthopedic shoulder surgeons I talked to, who's very good, told me, if you were told that you have a shoulder problem that's chronic and that you need surgery and that we have an opening next week, run for your life. OK. These are long-term chronic problems. People should see a doctor, think about it, weigh the options, come back for another visit and then schedule surgery.

SCHUMANN: When you're sick but aren't sure what's going on yet, you need to see doctors who are good listeners and creative thinkers. You're often going to need testing and a lot of patience. And you'll need to see more than one doctor - and that's where the second opinion comes in.

GORDON: So this process is actually really different from choosing a surgeon. Once you have the diagnosis and it's clear that you are really going to need a procedure to help take care of it, Marty's advice is to go to someone who does that one procedure and somebody who does it over and over again.

MAKARY: Once you figure out that you absolutely need the procedure, once you've been diagnosed with cancer and you recognize you need that cancer removed, you want to go to somebody who has a lot of experience with it.

SCHUMANN: And when it comes to surgery, doctors who have the highest surgical volume - that is, they do the same surgery all the time - they tend to have the best outcomes.

GORDON: Ask your primary care doctor for their suggestions about good surgeons. And when you go to meet the surgeon, ask about the different types of procedures that they focus on and how many they do each month.

SCHUMANN: There's a great resource that you can check out. It's ProPublica's surgeon's scorecard website. Journalists have made a database of surgeons from around the country and how their complication rates vary compared to their peers. This info may not apply to you if you need an unusual procedure, but it's really helpful for common surgeries like joint replacements or gallbladder removals.

GORDON: The research on this is really clear - the more a surgeon does the surgery, the better the outcomes. So that is our takeaway No. 4 - if you need a procedure, you should go to someone who does it all the time.


GORDON: So, John, remember in medical school, I definitely got medical studentitis. You know what I mean, right? When everyone in the med school class thinks that they have some rare disease that we're studying.


GORDON: What did you think you had?

SCHUMANN: Well, like, I don't know. I had, like, a stiff neck one time and I was sure that I had neck cancer. Or, you know, you hear about these kind of rare autoimmune things, and they have funny names like bullous pemphigoid - and I definitely was under the impression that that was something that I either had or was going to get.

GORDON: Yeah. I thought that I had diabetic neuropathy because my leg was tingling one time while I was trying to fall asleep. And I was like, oh, my God, I have advanced diabetes - thankfully, I don't. But I really think my patients experience the same thing sometimes. You know, something's going on in their body. Like, something doesn't feel right. And they type their symptoms into Google. And, you know, by the time they're done searching, they are freaking out, thinking that they have some rare disease.

SCHUMANN: Definitely. Well, we can see that when our patients are doing Internet searches. And, you know, I talk to a lot of doctors. And I definitely see some eye rolls when they talk about their patients and their Google searches.


SCHUMANN: But the thing is, I want patients to do research. I want them to feel like they can get the best information out there and ask a lot of questions so that they feel more empowered in their health care.

GORDON: So the key to using the Internet to better understand your illness - tread carefully.

SCHUMANN: Yeah. So online research can help you learn about what to expect from different treatments or from the illness itself. And so look at reliable sources like pubmed.gov, which is a free repository of medical research.

GORDON: We also suggest using patient-focused websites that are from respected medical centers - places like the Mayo Clinic or Harvard Medical School.

SCHUMANN: And the U.S. Preventive Services Task Force is really another great place to start your research. It's a government panel that makes recommendations about what kind of screening tests are appropriate at certain ages. Those are tests like mammograms or pap smears, tests that can really save your life.

GORDON: So if these tests can really save your life, shouldn't you just sign up for every single one and get them every time you come to the doctor?

SCHUMANN: Not so fast. Here's Marty Makary again.

MAKARY: If there's one theme in the medical literature in the last five years, it's been, we have been overdoing it. Less is more.


GORDON: So what exactly is too much testing? It can be really tricky to understand because we often think that more information is always better. John, you know, I'm sure you have this, too. I sometimes have young, healthy patients who walk in and they say, I'm here for bloodwork. Give me everything. And I'm thinking to myself, wait, what? What do you mean? You don't need anything.

SCHUMANN: And you should know that just like every medication has side effects, every test has side effects, too.

GORDON: Here's an example from Shannon Brownlee.

BROWNLEE: A kid comes in - fell off the couch, bumped his head on the carpeted floor. Mom's worried. And the doctor examines the child and finds no neurological changes. This child is at extremely low risk of having any kind of problem, any kind of concussion. And yet, a CT is done just to, quote, "rule out" any kind of really bad outcome. And the problem is is that CT scan has a lot of radiation in it, packs a punch. And it increases the risk of that child will eventually develop cancer down the road.

GORDON: It can be really hard to figure out when certain tests are necessary and when they aren't. And there isn't always a right answer. But the take-home point is that you owe it to yourself to be skeptical. And if you have concerns, you have the right to bring it up with your doctor.

SCHUMANN: And if you're doing research online and your doctor gets defensive about it, Shannon Brownlee says maybe that's their problem, not yours.

BROWNLEE: What do you do in that situation? You try to open a real dialogue with your doctor. You try to say, listen; this is what I found. And I don't know what to believe now. And then you listen very carefully to how your doctor talks to you. If your doctor just dismisses everything, that's not being respectful of you. That's not being respectful of the work that you've put in.

SCHUMANN: This is a quick takeaway. Takeaway No. 5 - use the Internet but use it wisely.

GORDON: Rather than stressing out after you Google your symptoms, turn to people on the Internet who are going through something similar.

SCHUMANN: There are online support groups for every diagnosis you can imagine on Facebook, Reddit or on websites specific to your disease.

GORDON: Liz Salmi, she's found a real community on Twitter

SALMI: Clinicians and researchers are talking to each other. And patients are talking to each other. And now they're starting to connect across those boundaries where there's no hierarchy of, you know, only the doctor knows these things - it's kind of, like, flattening that hierarchy.


GORDON: All right, moving on. Just like every test has side effects, every treatment has side effects, too.

SCHUMANN: And not every treatment works as well as we hope. When Shannon Brownlee’s own father got sick about 10 years ago, she learned firsthand about some of the limitations of medical technology.

GORDON: And she learned that she would have to fight on his behalf.

BROWNLEE: So my dad was in the hospital. And he'd had a little stroke. And he was in his 80s. He was pretty frail.

SCHUMANN: Shannon's dad wanted to get out of the hospital so he could spend time with the family, but his doctors didn't even know that.

BROWNLEE: They did a test that showed that his carotid arteries were 70% clogged.

GORDON: His doctors recommended a surgery on those arteries that can reduce the risk of another stroke. But it's a really major surgery, and it can be really dangerous for elderly people.

BROWNLEE: So the surgeon says, you know, your dad needs the surgery. And the family is sitting around saying, OK, tell us all about the surgery. And he's launches into what the surgery does and what it's like and et cetera, et cetera. And finally, I asked a question that made him stop. And I said, what is it going to do for his quality of life? What will this do for my dad's quality of life? And he said, oh, absolutely nothing.

SCHUMANN: Shannon and her family had learned an important lesson. They had to be advocates for their dad.

GORDON: Modern medicine - we really have some incredible technology and it can save lives, but it's not perfect and it usually comes with side effects.

SCHUMANN: And it's always your right to decide if those side effects are worth it to you. You always have the right to refuse a medication or procedure even if your doctor really, really thinks it will help you.

GORDON: To help figure out if the benefits of a treatment outweigh the risks, Shannon suggests that you ask your doctor some specific questions.

BROWNLEE: What happens if I don't get treated? What are the chances that this treatment is going to work for me? Another question is, what are some of the side effects of this treatment? What are some of the possible bad outcomes of this treatment?


SCHUMANN: She suggests that you ask how a treatment might affect your quality of life or symptoms that are particularly frustrating. Your doctor may not understand what your priorities are, so you need to focus on them.

BROWNLEE: Sometimes we think that a treatment is intended to do one thing and, in fact, it's intended to do something different. And if the treatment isn't going to help you walk better or, you know, breathe easier, whatever it is that you think it's going to do, then you want to reconsider whether you want the treatment at all.

GORDON: You need to do a lot of reflecting about what you're hoping to get out of a treatment. And sometimes it requires asking yourself uncomfortable and scary questions. You have to think about if the benefits truly do outweigh the risks.

SCHUMANN: For some people, the goal of a treatment might be prolonging your life as much as possible. For others, the biggest priority might be staying out of the hospital or avoiding sedating medication so you can stay alert. It might just be being able to eat food with your friends or being able to go for a walk.

GORDON: Marty Makary, he has some language he's heard patients use before when they aren't sure if they want to proceed with a surgery.

MAKARY: Sometimes a patient will come in and say, you know, before we go too far down the road, I just want to know, does having this biopsy change what we're going to do next? Because I don't think I want to do anything.

GORDON: Once you have a clear sense of what your priorities are, focus all of your conversations with your doctors on those specific questions. That is our final takeaway - figure out what matters to you and fight for it.


SCHUMANN: Eleven years after Liz Salmi's brain cancer diagnosis, she's doing great. She lives with her husband and cat in Sacramento. She just went on a vacation to Colombia.

GORDON: And she's built a whole career around helping other patients feel just as empowered as she does.

SCHUMANN: In fact, Liz is so sure about what she needs, she even wrote a job description for the kind of doctor she was looking for when she changed insurance a few years ago.

SALMI: The job posting says rock-star patient seeks primary care physician to form all-star supergroup.

GORDON: She definitely is a rock-star patient.

SALMI: You understand it is important to understand what matters most to your patients, encourage curiosity and questions and believe that the patient is the true owner of their health data. If this sounds like you, let's talk.


GORDON: All right, John. What do patients need to remember so that they can also be rock-star patients?

SCHUMANN: First, your primary care doctor is the captain of your health care team.

BROWNLEE: Not having a primary care doctor is a little bit like being your own general contractor when you build your house. It's really hard to do.

GORDON: Do not be afraid to get a second opinion.

MAKARY: It's always good to get a second opinion. Don't worry about the doctor's feelings. Worry about your health.

BROWNLEE: Any time you are told you need a serious, invasive procedure or you need to take a dangerous drug like chemotherapy, a second opinion is a good idea.

SCHUMANN: Takeaway No. 3 - get organized, stay organized and find someone to help you if you can't do it yourself.

MAKARY: When patients have a navigator with them and they are taking notes, they are getting far more information extracted from that visit because the patient is often overwhelmed.

GORDON: Takeaway No. 4 - if you need a procedure, go to someone who does it all the time.

MAKARY: And then you want someone who's a master of the intervention.

SCHUMANN: Takeaway No. 5 - use the Internet, but use it wisely.

BROWNLEE: I think it's a great outlet for people to be able to talk to other people who have the same disease.

GORDON: And our final takeaway, takeaway No. 6 - find out what matters to you and fight for it.

BROWNLEE: You need to think about the things that are really important to you and what it is you hope that treatment is going to do for you.


SCHUMANN: For more NPR LIFE KIT, check out our next episode in this guide. We talk about taking care of a loved one when they get sick.

GORDON: If you like what you hear, make sure to check out our other LIFE KIT guides at npr.org/lifekit. And while you're there, subscribe to our newsletter. Also be sure to subscribe to LIFE KIT: All Guides so you never miss an episode. We have got new guides coming out every month.

SCHUMANN: And here, as always, is a completely random tip, this time from NPR's Suzette McLoone Lohmeyer.

SUZETTE MCLOONE LOHMEYER, BYLINE: So you can train your kids to give you space with a coffee mug. My kids know that if I'm holding a certain coffee mug, I'm having quiet time. They can sit next to me but no talking. This way, I have 15 minutes every morning to ease into the day and 15 minutes every afternoon to regroup. And, no, it doesn't work to hold the mug all day.

GORDON: (Laughter) I love that one. If you've got a good tip or want to suggest a topic, email us at lifekit@npr.org

SCHUMANN: I'm John Schumann.

GORDON: And I'm Mara Gordon. Thanks for listening.

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